T1 again after pancreas transplant

[KTerry81]

Hi, I had a pancreas transplant in 2010 after living with T1 for 28 years with almost 10 amazing years free from diabetes. My pancreas is now failing and I wondered how others have managed this, thank you

 

[Juicyj]

Hello @KTerry81

Sorry to hear your pancreas is failing @Grant_Vicat has also had a pancreas transplant - so have tagged him in for advice.

Best wishes J

 

[DCUKMod]

Hi, I had a pancreas transplant in 2010 after living with T1 for 28 years with almost 10 amazing years free from diabetes. My pancreas is now failing and I wondered how others have managed this, thank you

Oh dear KTerry81. That really is a rough deal. Did you have any other organs at the time, and if so, are they holding up?

The only reason I ask is a friend of mine had a kidney transplant, and pancreas at the same time. She was I never end stage kidney failure, on dialysis, so that was the primary driver. She was fab for a few years, then the new kidney started to fail too.

At that time, the medics did much, much more digging, only to find there was another reason for her kidney failure (nothing to do with her T1 diabetes), so at end stage again, she went back on the transplant list, and thus far that subsequent new kidney is doing well.

She has remained diabetes free for the whole time, since the first transplant. Her innards are getting a bit crowded with 4 kidneys and 2 pancreases in situ.

Good luck with it all. What's plans do you and your team have for supporting you on this new journey?

 

[Grant_Vicat]

Hi, I had a pancreas transplant in 2010 after living with T1 for 28 years with almost 10 amazing years free from diabetes. My pancreas is now failing and I wondered how others have managed this, thank you

Hi @KTerry81 I'm so sorry to hear this, the very thing we subconsciously dread, but shelve at the back of our minds until the unwanted news. Has the clinic indicated in what way it is failing? On 13th August 1918 (exactly five years after my transplant began, I went for my 3 monthly check-up and the doctor said "I trust you'll be celebrating tomorrow?"
"Too true I will".
It was not to be. The same man phoned me early the next morning to tell me that my Lipase (especially) and Amylase levels were at least three times the acceptable level. This could either be pancreatitis (I had no pain), or rejection ("How's that possible? I'd be in severe Ketoacidosis wouldn't I?". Not necessarily because it is a gradual onset), or pancreatic cancer. I could not focus on anything else for weeks. I was given several blood tests at fortnightly intervals and a CT scan. They ruled out cancer and decided to double the dose of Mycophenolate. On 7th February 2019 both had reached an acceptable level. I am still on a double dose - if they increased the Tacrolimus (Adoport) it would damage my transplanted kidney! Although I am still avoiding injections and finger stabbing, my tremors have further increased and I am more conscious of how I can't take anything for granted.
Have you had much discussion with your co-ordinators? If not, they are superb. Not only did mine check up on my mental state at regular stages or whenever I contacted them, they also sent me the Lipase and Amylase results as soon as they became available. Obviously I have no knowledge of the cause of your failing pancreas, but I'm hoping that there are still avenues to explore in your case. Had doubling the dose not worked in my case, they would then have started me on steroids. I can assure you that you have my absolute sympathy and empathy and I pray that something positive comes your way as soon as possible. Good luck!